Australian Guardianship and Administration Council Conference

Australian Guardianship and Administration Council Conference
“Renewal: Putting Rights into Practice”, 21 October, 2022
Is the NDIS living up to our expectations?

I would like to acknowledge the traditional owners of the lands on which we are meeting today and to pay my respects to elders past, present and emerging.

I am delighted to have the opportunity to give the opening keynote address for your most important conference, with its focus on: Putting Rights into Practice.

There is no better time, in my view, to be focusing on both rights and good practices.

Putting rights into practice, effective implementation of government policies, including Australia’s obligations under the UN Convention on the Rights of Persons with Disability, and the effective implementation of the NDIS so that it achieves its vision are all, in my view, essential preconditions for ensuring that people with disability are full citizens, have good lives and have equal opportunities.

Last December, John Chesterman approached me and suggested he would like me to speak to your conference on the topic “Is the NDIS living up to our expectations?” He wrote: “I and the conference organising committee thought you would be the perfect speaker to address that topic”.

I do not know what John knew at the time, but his approach now seems prescient given that on Tuesday the Minister for the NDIS, the Honourable Bill Shorten, announced that he had asked me to Co-Chair an independent review of the NDIS!

I am greatly honoured and humbled to have been asked to Co-Chair this review of the NDIS, because the NDIS has not lived up to the expectations of the disability community.

Perhaps, we should not be surprised that the NDIS has not lived up to expectations, given its transformational nature, the disruption to the previous structure of disability supports and the speed of its introduction.

However, as one of the key architects of the Scheme, I believe now is the time to ensure the NDIS operates in the way it was always intended to do and the establishment of the NDIS Review represents an extraordinary opportunity to work with the disability community to do just that.

We cannot mess it up, because there will never be a better chance, especially given the depth of commitment of the Albanese Government and Minister Shorten to the NDIS.

The Review reports directly to Disability Reform Ministers, which is very significant, because it means we will have direct access to the decision makers.

The Ministers are meeting in Perth today and so this is the reason why I could not attend your conference, in person.

I am very disappointed that I cannot be with you today, as it would have been an excellent opportunity to hear from you directly regarding your views on the implementation of the NDIS.

The bedrock of the NDIS Review will be our engagement with participants and families and key stakeholders, and I therefore very much look forward to another opportunity to meet with you.  I want to assure you that people with disability, their families, carers and guardians will be at the heart of this Review, right from the start.

From day one we have begun developing a schedule that ensures participation and contribution by the disability community into the work of the Review.  This includes creating opportunities for people who are often less visible or who go unheard, to engage and participate.

I know from speaking to some of your members that as guardians, administrators and advocates, you support many NDIS participants with some of the most complex needs. In many cases these people may not always speak for themselves but they can express their preferences and must be supported to do so.  Hearing from you will be vital to the success of the review, because I do believe that if we can solve the most complex problems, the less complex can often solve itself.

Today, I would like to outline the structure and Terms of Reference for the Review and then raise some important questions in relation to safeguarding people with disability, which provide critical practical support to their rights as individuals and citizens.

First, I am delighted that the Review is being led by an outstanding Expert Panel and to have the opportunity to work closely with all of them and, especially, my Co-Chair, Lisa Paul. Lisa brings to the Review a wealth of experience in the Commonwealth Government, especially in education, employment, social policy and housing. She also has outstanding values.

I expect that most of the other Panel members are known to you and, of course, Kevin Cocks, is a former Anti-Discrimination Commissioner in Queensland.

All of the members of the Expert Panel are united in a shared mission to work together to inform and deliver a better NDIS.

The Expert Panel will be supported by a Secretariat located in the Department of Prime Ministers and Cabinet and brings together people from across the Commonwealth and State Governments and the disability community.

The Expert Panel will also have access to independent research.

However, for the Review to be successful, it must be owned by the disability community, so collaborative engagement and co-design will lie at its heart.

This is not the Expert Panel’s Review, it is your review and so this review needs to be informed and supported by champions and allies from across the disability community and all governments.

We therefore want to hear from you, not only about what is not working – because we have already had many inquiries and reviews focusing on these issues already – but about what will work and, especially, what will make a practical and positive difference to the lives of people with disability, their families and carers.

The Terms of Reference for the Review are very broad. In effect, we can investigate any aspect of the NDIS and the eco-system that surrounds it.

Therefore, our challenge will be where to focus our efforts, given that the Review is scheduled to conclude in 12 months’ time.

Fortunately, our Terms of Reference encourage us to bring forward recommendations to Ministers, as soon as they are ready.

We are therefore looking for early findings as well as tackling the significant challenges in the way the NDIS has been implemented and now present as potentially wicked problems.

However, we must be realistic.  Identifying early findings and bringing them forward, which may be described by some as “quick wins”, will not solve the bigger issues with the NDIS. The problems with the NDIS did not develop overnight and will not all be solved overnight.

However, while there are many challenges, we also have the advantage of experience with the NDIS over the period of nearly a decade since it commenced on 1 July, 2013 in four trial sites located in the Barwon region of Victoria, the Newcastle region in NSW and South Australia and Tasmania.

There is now a wealth of data to be analysed and on which the Review can be built.

However, data only tells part of the story.

The insights that shine a light on the real stories behind the data can only be gained from the lived experience of participants and their families and supporters.  Lived experience is essential and so we will want to hear from everyone with experience of the NDIS – both good and bad.

In thinking about the priorities for the Review it is important to be balanced and, in particular, to recognise that the NDIS in some cases has already transformed lives.

Out of the blue, I received an email about three weeks ago in which someone wrote, in gratitude:

“A decade ago, I ended my career… to care for my wife when she was diagnosed with younger onset dementia… As you would understand it was life changing for both of us. However, the other life-changing element was the support package she received from the NDIS which provided [her] with support, life opportunities and dignity. It meant I could care for her at our home for almost 8 years. She is now in residential high-care, and close to the end of her life. She remains surrounded by people who love and celebrate her.”

The email expressed thanks for the role that I played in the establishment of the NDIS, but as I wrote back it is the Australian people to whom we owe the greatest debt of gratitude.

Therefore the Review needs to engage not just people with disability, their families and carers, it needs to engage all Australians, as did the original Every Australian Counts campaign.  Remember the NDIS is for all Australians who need it – now and in the future. It is a pillar on which the decency and fairness of Australian society is built, because none of us know when we or our children or our grandchildren may need it.

The Terms of Reference for the Review include:

• the participant experience, including the experiences of First Nations Australians, those from culturally and linguistically diverse backgrounds, LGBTIQ, people with especially complex communications and support needs and psychosocial disability
• system sustainability and the effectiveness of the NDIS
• the benefits of investing in the NDIS
• outcomes from the NDIS, including social and economic participation and greater independence
• adequacy of supports for people with disability outside the NDIS
• interfaces with other service systems and their universal service obligations
• market stewardship and pricing
• quality of NDIS services
• thin markets, including rural and remote services
• workforce
• housing, including Specialist Disability Accommodation, and
• governance of the NDIS.

There are also two terms of reference which specifically refer to safeguards and the regulatory framework.

These are that the NDIS Review should make findings and recommendations to Ministers and reforms to:

• “ensure the adequacy and effectiveness of the operation of the Quality and Safeguards Framework in providing appropriate protection for participants while supporting a vibrant market and workforce; and
• improve the efficiency and effectiveness of current price setting and regulatory functions for providers and workers (market oversight, coverage and monitoring), including interaction with other relevant Commonwealth, State and Territory regulatory systems.”

Against this background, I have started to think about where the Review might focus. These are some early thoughts and ones which I have not yet had a chance to discuss with the other members of the Expert Panel.

So please think about the areas I am going to mention as thought starters. Your views and the views of other key stakeholders will be essential before we finalise the Review priorities in the area of safeguarding.

More than a decade ago, in 2012 and 2013, when I was Co-chair of the Quality and Safeguards Committee of the COAG NDIS Reform Council. I co-authored a paper entitled A Personalised Approach to Safeguards in the NDIS.

It proposed a three-tier safeguarding framework consisting of:

• Developmental safeguards
• Protective safeguards
• Corrective safeguards

We envisioned that the cornerstone of the new safeguarding framework would be developmental safeguards, starting with the person, their capacity and their circumstances. Most importantly we proposed that these safeguards would strengthen all of the elements that citizens need to build good and safe lives. It recommended building the personal, knowledge, material and social capital of NDIS participants.

We then recommended that developmental safeguards would need to be supplemented by preventative safeguards, focused on service design. This is because the development of cultures to prevent abuse and neglect and which recognise that developmental safeguards would not be sufficient in all cases, especially when some people with disability have very complex support needs or limited communication skills.

Preventative safeguards include measures which actively address risks for individuals. Community Visitors programs, which could not be agreed at the time of the introduction of the NDIS, are a good example of an important protective safeguard.

Corrective safeguards offer redress and trauma support in the unfortunate event that abuse, neglect, violence or exploitation of people with disability has occurred.

In October last year, MDI made a submission to the Review of the Victorian Disability Act where we wrote:

“It was envisaged that developmental safeguards would be identified and then built on as part of NDIS capacity building supports. Unfortunately, this has not occurred as part of the implementation of the NDIS. In fact, developmental safeguards are barely mentioned. Further, the risks for some people with disability have increased through a number of factors including the introduction of unregistered providers, a lack of effective stewardship of the NDIS market, the risks of exploitation and abuse of NDIS participants with large funding packages and a striking lack of investment in informal supports and supported decision making for NDIS participants. The NDIS has not driven innovation in service design and delivery at the scale hoped for by people with disability and their families. While there are certainly pockets of innovation and change, it has not driven a reduction in the use of closed settings at a scale imagined at the time of the introduction of the NDIS. What is worse, the NDIS planning process and pricing structure has produced some perverse and unintended consequences.”

This quote highlights a very important issue which I hope the NDIS Review will consider and that is that key aspects of the NDIS such as safeguards cannot be looked at independently of other design features, because of the interactions and interdependencies between these features. Therefore, an important aspect of the Review will be untangling, prioritising and then redesigning key features of the Scheme so that they come together holistically and put people with disability back at the centre of the NDIS.

The second factor, beyond developmental safeguards, in preventing abuse, neglect, violence and exploitation of people with disability, which I believe is most important, is open systems and settings. Without connectedness and inclusion, people with disability are at unnecessary risk. We must ensure that there is sunlight, in the lives of people with disability.

This points to the fact that a good life is not just based on funded supports. Instead, a good life is enabled by appropriate funded supports, within a broader context of interdependent formal services and informal supports.

One of the great challenges that the NDIS faces and one which, I think, we did not consider sufficiently in the design of the NDIS is how to ensure that there is both individualisation and at the same time the NDIS contributes to social capital.

Tailoring of supports to individual needs is, of course, one of the NDIS’s greatest strength. However, we now have more than $30 billion each year which is individualised.

However, in a system which is now so individualised, how should social capital be built. What are the potential policy levers?

I think this will require systemic as well as individual responses.

For example, when I try and organise shared supports for my sons or their friends because they want to go out together and only need one support worker, I have found that the systems service providers have built do not accommodate shared supports. This was never an intention of the NDIS and so I insist that supports should be shared, because I do not want excessive support to dominate my sons’ social lives and friendships.

However, could and should more be done at the systemic level?

One potential place to start is Australia’s Disability Strategy 2021- 2031 and its key outcome areas of:

• Employment and Financial Security
• Inclusive Homes and Communities
• Safety, Rights and Justice
• Personal and Community Support
• Education and Learning
• Health and Wellbeing, and
• Community Attitudes.

The new ADS includes a much stronger accountability framework, compared to its predecessor, and there are outcome measures attaching to the ADS which are designed to drive change.

Another opportunity presents through Local Area Coordination. Since the introduction of the NDIS, LACs have been largely focused on planning and assessment and their crucial role in contributing to a more inclusive communities and supporting people with disability, not eligible for the NDIS, has fallen by the wayside.

As a result, a vital contributor to community capital has been missing.

In thinking about the potential role of LACs in an improved NDIS, it is worth reflecting on the origins of Local Area Coordination.

LACs were introduced in Western Australia, at a time when people with disability and their families were moving to Perth because there were insufficient services available to them. At the time, the Disability Services Commission in WA employed a fly-in fly-out multiple, which was ineffective.

The then head of country services, Greg Lewis, decided that the best response would be to build capacity in local communities. Within a few years, the LAC model was so successful that people with disability and their families not only stopped shifting to Perth but many of those who had left returned to their country towns and rural communities and the model was extended throughout WA.

Local Area Coordination can therefore be an important contributor to social and community capital. A community capitals framework also recognises that a good life is not just built on paid supports. We all need to be part of the communities in which we live and feel welcome and included. We all need family and friends and loving relationships.

The final point that I would like to touch on, today, is the safeguarding framework, structures and organisations which have developed since the NDIS commenced.

We now have a NDIS Quality and Safeguards Commission and a national approach to quality and safeguards. I believe this is an important step forward.

We also have worker exclusion schemes, which mean that disability workers, who on the balance of probabilities are considered to be a risk to people with disability, can be banned from working with people with disability through registered NDIS providers. This information is also publicly available and so those who are self-managing and using non-registered providers can access information to ensure that they are not using workers who have been banned. They can also insist that their workers register under the worker registration scheme in some jurisdictions.

Again, I think that the development of worker exclusion schemes is a very important step forward, given that proving violence, abuse, neglect or exploitation beyond reasonable doubt can be very difficult for people with disability, as the criminal justice system does not always serve them well.

However, perpetrators of abuse are often attracted to vulnerable people, not just people with disability, and unfortunately the worker-registration schemes across children, aged care and disability are not sufficiently joined up.

We also have a multiplicity of regulators in the disability sector. Then you, in your own roles as guardians and administrators, have many intersections with the NDIS and, to be effective, there needs to be timely, accurate and secure communications between your organisations and the NDIA and NQSC.

Further, since the NDIS commenced, literally tens of thousands of disability service providers have set up businesses, which are not regulated nor registered. One estimate I have been seen suggests that there could be 100,000 unregistered providers of NDIS services. This is an extraordinary number, in a very short period of time.

In quoting the statistics, I cannot stress enough that it would be a mistake to make simplistic judgements which would imply that registered equals “good” and that non-registered equals “bad”.

In fact, my personal experience is that unregistered providers are amongst the best that my sons’ use.

However, one of the keys to an effective safeguarding system across all of Australia’s state and territory jurisdictions is timely and accurate information flows. They are key, because it is often the patterns of abuse or neglect or violence or exploitation that best point to a problem with ensuring that people with disability are not placed at unnecessary and unwanted risk.

At the same time in an individualised system, these information flows contain very sensitive personal data and so a key challenge is how to balance privacy, protection of this personal information and effective safeguarding.

It is also notable that the boundaries of what should be regulated are unclear. The suggestion that “high-risk” supports should be regulated and that “low-risk” supports should not, is not necessarily straightforward, because high risk supports for one person could be low or moderate risk for another. Again, this reflects an individualised system.

As you know well, before the introduction of the NDIS, regulation of the disability sector was primarily a State responsibility, reflecting the responsibility of States and Territories for disability services. Effectively, services funded by State and Territory governments were regulated and so the source of funding, overlaid with an assessment of service risk, determined the scope and role of regulators. There was also no or little need for interaction between the Commonwealth and State governments.

So I expect that offering advice on refining the regulatory framework will be an important aspect of the NDIS Review and your insights and experiences will be invaluable.

In closing, this is an extraordinarily exciting time.

We do want to work closely with you and all of our stakeholders during this Review.

We will work together and we do want to know your ideas.

We also want to make sure that the voices that have not been heard until now are now heard.

This Review will be built on lived experience and on the evidence of the last 9 years since the NDIS commenced.

The NDIS Review reports directly to Ministers and is a unique opportunity to ensure that the NDIS lives up to our expectations and, especially, the expectations of people with disability, their families and carers, now and in the future.

To participate in the Review please go to our website: www.ndisreview.gov.au and register for updates.

Finally, I hope that your conference is an outstanding success and I look forward to when our paths cross in person.

Thank you.

Professor Bruce Bonyhady

Co-Chair, NDIS Review and Executive Chair and Director, Melbourne Disability Institute